Electra & AML: A Bad Week

(See all posts related to Electra's ongoing treatment)

NOTE: This blog post was written over the course of several days in which I've been both lazy and unfocused, so some things have changed slightly over the course of that time. I'll try to be coherent but make no guarantees.


I will endeavour to post more in (and more regularly) in the coming weeks, but I'm finding it hard to concentrate on much these days. Focus, often elusive for me seems to have left me entirely. I have several more thoughts that build off this post, though, so I will try.

I've spent most of last week and the start of this one in Birmingham, and while I'm glad to have been there to lend some comfort, it was not an easy week. To be blunt, things are not going very well. Electra had a few good days while I was there but many more very bad ones.

At this stage of treatment (and for the near future), the biggest risk to Electra is an infection. Though there are other things to worry about (recurrence of the cancer and GVHD), infection is the primary concern right now. With her immune system depleted by the chemo, her body lacks the ability to fight off disease, so even a simple cough or cold can be deadly. This is why she is in a solo/isolation room and why certain precautions are observed, specifically relating to food, visitors, etc. However, the possibility of infection can never be entirely eliminated, and that reality was one that has reared its ugly head.

Starting about ten days ago, Electra started spiking a fever. The normal temperature for a human being is 36.6˚C. The hospital considers it to be a fever worth worrying about at 38˚. Electra peaked at slightly over 40˚. She then had a fever every day until yesterday. On top of this, she was in constant discomfort, generally in and out of sleep (but mostly asleep, albeit fitfully), was nauseous and vomiting, weak and tired and not infrequently in pain. In short, she was unwell in almost every way possible.

There are several implications of this, none of them good. At this stage in recovery, an infection is the most dangerous thing (as I said above). So there is a very real risk that something small and benign (to an average, healthy person) can be hugely damaging or even fatal. But more than this, it indicates that her immune system isn't rebounding; this is backed up by her continuing low white cell count. To try and ameliorate the situation, she was put back on GCSF, the growth hormone which can spur the development of more white cells. This, however, will only work if there are a few already beginning to develop (i.e. her bone marrow is at least beginning to return). In the absence of any early white cells, the GCSF will do exactly nothing at all.

The good news is that this appears to be working. Over the last few days, her white count has started to slowly tick upwards and her overall sense of healthiness has very slightly improved. She is still miles from healthy, but at least she is apparently edging in the right direction, albeit hesitantly. On Monday, she will go in for another bone marrow biopsy, which will determine whether there's been any regrowth, and if so whether it is her DNA or her brother's and whether it is free of leukaemia. Unfortunately, the odds of purely healthy regrowth is slim, but we will hope for the best and I will post about that another day. One fight at a time.

The most poignant part of this for all me was that watching this unfold, sitting by her bed for hours at a time while she slept or struggled to rouse herself and keep even the smallest amount of food and water down, is the sense of reality it drives home. I'm a numbers guy; I know what the odds are here (not good) and I know what the probable outcome is. I understand what we do to try and improve those numbers. But numbers are dispassionate and clinical. This isn't. This is real.

Electra has obviously been visible in dire straights before, and I've written about that. But this is different. Because the outcome is so daunting now, the pain of seeing her in such a state is compounded by the terror that this is the first step on a dark and empty path. Put simply, this is the first time it seemed like she really might die. It's the first time that I've been this scared.

On Electra's side, this has also made it the worst hospital stay thus far, from an emotional viewpoint. By dint of her earlier remission, there was a real sense that she was somewhat in the clear (as much so as is ever possible with cancer). There were very real concerns of course-how to reintegrate with work, how to get her strength back, how to find meaning in a normal life after months of focusing only on recovery. But these were all overshadowed by having wrested her life back from the pincers of cancer. To then be trust back into the thick of it, and to undergo such horrible health is a soul-destroying and emotionally crippling slap in the face. More than this, however, is the intent of pursuing this tougher treatment. When Electra elected to go through the tougher FLAG chemo, it was with the intent of trying to achieve a cure, and failing that, be in passable-enough health to be able to travel and relax while recuperating. Now it felt like that was being taken away and she might be destined to finish her days in discomfort and pain, confined to a hospital bed in Birmingham, 6000km from "home". I don't imagine I need to explain that this is the type of thing that can break someone, and while Electra has remained stronger than I would have, it has taken its toll.

Still, with her white cell count slowly ticking upwards, it is possible that we may have the faintest of glimmers at the end of this obsidian tunnel. We're not popping the champagne corks just yet, but it's fair to say that the appropriate fingers have been crossed. Now for the biopsy and its eventual results…

Electra & AML: The Hard Truth

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I'm currently up in Birmingham again, having spent the last ten days or so down in London (facilitated by the arrival of Electra's mother, who has been able to keep her company in  my absence). I'm going up in a rather anxious state, as yesterday and today have been somewhat tumultuous days in Electra's progress. Hit by an infection, Electra spent most of the day with a fever of 39 degrees and up, periodic low blood pressure and erratic pulse rates. Basically all the signs of a nasty infection; the exact type of thing you fear in an immune-depleted patient recovering from chemotherapy. The hard truth of the current situation is that, even when things seem good and stable, danger and fear are constant companions. And I think that I have perhaps skirted the hardest realities of the situation for too long.

WARNING: In this post, I am going to try and give the unvarnished truth. While things are by no means hopeless, some of the things I will discuss are pretty grim. This may be hard to read; it's certainly been hard to experience.

The biggest and harshest reality is the overall prognosis. I've said in past posts that leukaemia has been one of the big research wins in medical science over the past decades, and this is certainly true; the mortality rate is nowhere near as high as it used to be. However, Electra's case is now one of fairly early relapse. That changes things quite a bit. The relapse itself indicates that the cancer is quite tenacious and pernicious; while it was all but destroyed, it has come roaring back, obviously indicating a very tough instance of the cancer. This is further seen in her biopsy results, which showed a drop in the amount of donor DNA in her bone marrow: from a peak of 98% donor DNA, she dropped to about 58% by the middle of December when she was diagnosed. Her own bone marrow cells are fighting back and multiplying quickly, but multiplying the cancerous cells. In addition, the trisomy-8 genetic anomaly that was previously wiped out has returned, and has come with two new genetic anomalies involving transposed genes. The details of what this implies are beyond me, but the takeaway is this: her disease has mutated. If these conditions had existed initially, she would have been in a higher risk group. So the cancer is mutating into an even tougher form than it was initially.

The prognosis, therefore, is much, much less certain. The consultant with whom we spoke pegged it at a 5-10% chance of a cure, as I've discussed previously. What I'd not realised at the time (or perhaps blocked out) was that this is the last chance. If the cancer comes back again, there is nothing that can be done-no more chemo, no more transplants, nothing. 5-10% is her overall odds, and the time frames, though much less certain, aren't great either (12-24 months if we're being optimistic, which is tough to do given the recurrence happened after 6.5 months of remission last time). So, miracles can happen and 5-10% isn't nothing, but it's not exactly encouraging. Further, I've noticed that there's been a marked change in the way the doctors discuss longer outcomes. The focus is, in medical parlance, "extending life". We are trying to stay hopeful, but the deck is much more heavily stacked against Electra this time around.

On top of this, this stint in the hospital has proven much tougher for Electra, both emotionally and physically. Emotionally, I think it's made harder by the feeling that she was done with this. She was in remission, she was out of the hospital save for routine blood work as a day patient, etc. To be pulled back in is heart-rending, and not improved by the grim prognosis. So spirits have waned rather dramatically, escape attempts pondered, tears shed and depression has made a few appearances. Physically, the single biggest recurring phenomenon here has been one of utter discomfort. Electra simply cannot find any position-lying or sitting-that is comfortable. This obviously impedes sleep, makes it even more depressing, and just generally makes the experience more horrible that it would otherwise be. On top of this, she has struggled with a day of unexplained lower-back agony, sudden and severe nausea and vomiting, a loss of appetite and more. Plus, a nearly constant fever often lasting for days.

Today was especially bad. As I said earlier, Electra seems to have acquired a rather nasty infection and spent most of the day spiking a temperature in the low 40s. With antibiotics and paracetamol, they were able to bring it down to 39˚, and even as low as 38.2˚, but never out of the range they worry about. She's been put on the critical care nursing list, so has greater supervision and checks, but this is obviously yet another worrying development. And, of course, fevers of that range are often accompanied by delirium (not the good kind), fatigue, more nausea/vomiting and further discomfort. Between infections and the side effects of the chemo, she is being battered from every direction with massive intensity.

I don't want this post to scare people too much. Some of what Electra has been going through is expected, and some of it doesn't even indicate a particular problem per se. But the topic of mortality, especially of someone I love so deeply, is a difficult subject for me to broach, yet one I need to force myself to do, as it is a likely outcome based on what they know. And because it is hard for me to discuss, or even to think about, I fear I often soften or skirt around such issues, both internally and in this forum. And anyone reading this deserves the truth of the situation, no matter how scary it is. 

We are not giving up hope, nor are we foregoing planning and dreaming for the future. It is important we do neither of these things. But it is equally important that we also accept, understand and prepare for the reality of the situation. And right now, that reality is full of ominous portent and very reasonable fear.

UPDATE: I wrote-but didn't post this-yesterday. I've just got back from the hospital now and although Electra is still struggling with periodic fevers and nausea, when I left her, her temperature seemed good, blood pressure was OK and her colour had come back (she was very pale and almost jaundiced looking when I arrived). We still don't know what infection she's got, but it's either healing, or least in a temporary respite.

Electra & AML: Last Chemo Ever, For Better or Worse

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So today was a rather significant milestone in this particular journey (well technically yesterday since I seem pathologically unable to get to bed at a decent hour ever). Today was Electra's last day of anti-AML chemotherapy. Ever.

The FLAG protocol that Electra is (was) on is a five-day course, and today was the fifth day. She is, of course, still in the hospital undergoing treatment, but that's more focused on the growth hormone to boost her red cell count, as well as the various prophylactic measures (antibiotics and anti-virals). The active application of chemotherapy is done. Further, this will be her last cycle in treatment of this disease. She will never have to undergo chemo again, barring (heaven forbid) the emergence of a different cancer later in life. Other than that, no more chemo. Buh-bye, thanks for the cancer-killing, no thanks for the immune system killing, the nausea, the hair loss and energy deprivation and the complete immunosuppression.

Of course, such a milestone as this is both relieving in one way, and foreboding in another. Allow me to explain. As this course of chemo comes to an end, the future forks into two distinct paths: curative or not. If she beats the odds and this course of treatment cures her, obviously she will no longer need the chemo. However, the ominous portend is that should this treatment fail, and the cancer relapse again, there are no real options. The chemo would never be successful again, no other realistic chemo options exist and her body would be hard-pressed to stand the strain. So the milestone is one we celebrate and observe, but with some trepidation.

The past year has been one of pain and suffering, fear and isolation, but love and hope as well; to preserve the latter, we are aiming for and hoping for a cure. But a frequent theme has been chemotherapy, and it is an amazing realisation to come to: she will not have to go through this again. Chemotherapy is very effective in many cancers, including blood and bone cancers. But it's a treatment so harsh and hard to deal with that it can often feel worse than the disease itself. So seeing it out the door is a cause for celebration, and is a victory in its own right.

I've said before (or meant to and forgot, possibly) that when dealing with a long trudge of a disease and treatment like this, that every victory, no matter how minor, matters. And this victory, though by no means the end of the struggle, is a key one. We needed the chemo, and it has kept her alive this long, but we never liked it. Chemotherapy is like cutting off your nose to spite your face; you poison yourself to get well.

So today, I saw, goodbye chemo. Don't let the door hit you on the ass on the way out. I appreciate everything you've done but hope I never see you again. And I'm reassured to know that, come what may, Electra certainly won't have to.

Electra & AML: Our New Years Eve Tradition

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So, remember my last post? Where I discussed why it was so important to us to celebrate New Years Eve in style and the plans we had to do so? Well, turns out that was optimistic thinking and our continuing streak of bad luck had other plans in mind. For the second year in a row, Electra started chemotherapy on New Years Eve. Evidently this is now our traditional celebration.

Basically, we'd been given the conditional all-clear to celebrate NYE as we'd planned, as Electra's counts were high enough. The condition, however, was the she come in for one final blood test on Wednesday, December 28th and that this test would be the final decision-maker as to whether she was healthy enough to stay out of the hospital until the new year. And sadly, she was not; specifically, her white cell count had dropped further, which put her at an increased risk of infection. If she were to contract an infection, the course of chemo she'd selected would be impossible: since the chemo would decimate her immune system, any contracted infection would potentially be fatal, and would definitely be a horrible experience. So they would be unable to start the chemo if she were to pick up so much as a nasty cold, and the risk of doing so was too high. So New Years Eve as planned was off, and it was into the hospital the next day.

Of course, that didn't happen either. The hospital was short on beds, so her admission date got bumped back to the 30th (despite the fact that I'd treated us to a nice "last night out" dinner on the 28th, harrumph).  On the 30th, she was admitted back into the haematology ward, and the treatment began. First step was the insert a new Hickman (aka central) line, as hers had been removed when she'd been in remission. Then came the application of GCSF, a growth hormone which in patients such as herself spurs the production of more white cells, better enabling the body to handle the coming onslaught of the chemotherapy. This had the added benefit of taking her out of a neutrapenic state, meaning she felt healthier (for awhile) and the precautions for visiting are lessened.

On the 31st, the chemotherapy began. The course she's now on is called FLAG and has two chemotherapy drug: fludarabine and cytarabine. The latter is given over four hours, the longest single-drug duration she's had to deal with.

The upshot of all this, of course, was another New Years Eve in the hospital. As you can imagine, we were gutted to hear the news, as we'd really been looking forward to a nice, fun, relaxing cottage weekend with close friends, games, drink and sleep. Instead it was sterile environments, crappy hospital food, pain and intense medication.

Still, these sorts of things are, to a certain degree, what you make of them. So we did our best. I brought in a bottle of sparkling wine and a black forest cake and we rang in the new year (two hours early due to fatigue) with bubbly, cake, music and even a little in-room dancing. It might not be what we'd planned, but it was the best we were able to make of it.

And here's to 2012 being a better year, with a proper end-of-year celebration!